This is a blog to chronicle the fabulous life of Connor Robertson. Despite the medical challenges that Connor faces at the moment he is a fighter. As his devoted & loving parents we want to see Connor enjoy all the adventures of life. With the wonderful support & love of our family & friends we intend on giving "our little bug" every opportunity in the world. We invite you to join us as we experience the journey together. May God be glorified in our chronicle of Connor's Adventurous Journey!

Friday, October 27, 2006

Connor is still having a difficult time waking up from all of this sedation. We won't be off of the morphine and ativan until the 3rd of November and I am hoping that it will make a significant difference in Little Bug's ability to be alert. I met today with one of the lung doctors who is, quite frankly, stomped by Connor's inability to get his lungs stronger. The pain management team will be by later this afternoon to talk about possibly weaning the new drug Clonidine as well. We just have to get Connor more awake so we can see the true state of what is going on in his body. Unfortunately, Connor is traveling in a nasty little cycle of events......More aggitation, then more sedation, then more diuretics, then more need for supplementing sodium, potassium, electrolites, then he can't keep his co2 levels down......YIKES....................It's horrible for him, because we are not making strides into new ground, we just keep going round and round the mountain. The pulmonologist said today that unfortunately, Connor shows all the outward signs of respitory failure, but somehow he compensates and tolerates it. They're not quite sure how he is doing it, but we know this can't go on forever. Please continue to pray. I'm not even sure how to pray at the moment, but I know that outside of God's healing touch upon Connor's body, we aren't going to be going home any time soon. Please ask God to touch Little Bug in an entirely new and fresh way with His healing hands.

Thursday, October 26, 2006

Before you read this post, please know that I'm just a Little Bug and sometimes I have a hard time figuring out this computer thing....especially Blogger!!!! I'm pretty sure the spacing got all messed up......SORRY......just remember that the comments are below each picture, even if there's a lot of space....oops................

....While I was sleeping today daddy went and picked me a beautiful fall leaf....I would love to say that I really like that special gift from daddy, but I haven't been awake today to see....Oh well, hopefully tomorrow....

This picture was actually taken yesterday...I'm trying to tell everyone to "GET ME OUTTA HERE".....Even in my sleep I had my little hand poking through the rails....

My day started out early with Mr. Kangaroo saying, "Littlebug, get outta the sack"!!!!! He was trying to protect me from the big bad.......

...pokey ladies with all those needles....Yep another blood draw for this tough guy! But I took it like a man and grined and bared it...can ya see the grin through my fat little cheeks.....but can you believe it, I virtually slept through the whole ordeal.......

.....but after it was all over my new friend Mr. Hippo helped me to mellow out and I fell faster to sleep then I was in the first place.....and by the way, if you don't get the trend here, I stayed that way the rest of the day!!!!!!!!

...Then our friends Amy and Alec came to say goodbye since they are on their way back to Alaska.....Bye, Bye Baby Alec...We Love You!!!!!!.....Not even a goodbye hug could wake this Little Bug up.......

Then the next thing I did was sleep all the way through my physical therapy appointment with my favorite PT, Gayle.....Gayle is absolutely the most wonderful therapist and friend....We are all blessed to have her in our lives.....

....Then Mama came and brought Daddy a fancy home cooked dinner.....I slept right through it, but it sure looked like they were having fun...I could hear them kissing so I thought I better just stay sleeping.......

Mama made one of Daddy's favorite meals, Corned Beef Brisket with Garlic Mashed Potatoes and corn and fruit and even sparkling cider......Hmmmmm, sounds so yummy...I can't wait until I have teeth to enjoy real food.....But 'cmon, let's be realistic, I couldn't eat if I wanted to because I'm still sleeping....

....Then Mama filled up my crib with toys.......Thanks mama, when I finally wake up I think I will be on sensory overload, but I know I will love seeing all my familiar friends from home.......I just wish I could wake up!!!!!!!!!!

Last, but certainly not least, I snuggled with Mama....She talked to me and kissed me all over, but I still slept away.....I could tell Mama wanted me to wake up but I wish there was some way to tell her, I just can't open my eyes....

PS ~ Oh, by the way, will you please say extra prayers tonight that I can wake up tomorrow.....I can tell Daddy, and especially Mama are worried that I can't wake up on my own.....I'm sure I'm just extra tired for some reason, but why don't you say some prayers any way!!!!! Thanks!!!

Wednesday, October 25, 2006

Oh here goes Dad again...scrubbing my mouth out.....no not with soap...with those little green sponges that make my mouth feel so much better!!!

Guess what everybody....I still weigh 16.5 lbs, so I didn't gain or lose weight while here at the hospital.....and that's a good thing!!!!

...Oh not this again...the board!!! No I'm not in trouble its just this x-ray table that is nothing but a hard flat chunk of wood they put me on to take chest x-rays. But the really funny thing about this whole ordeal is Daddy's funny apron...way ta go Pop!!!! Hey Pop even let me swing today...but I like my own swinging chair at home better so I better hurry up and get there real soon!!!!

...and last but not least....Daddy is at it again..everytime I open my eyes Daddy is doing something...I hope he's got his "cheaters" on.....Oh no he doesn't..AUGH!!!!!! Mom where are you when I need ya!!!

Lovebug hugs and kisses

Randy, Lori & Littlebug

ps: Connor is doing fairly well but has still got some way to go on the drug weaning plan. He still is not totally alert yet but he's getting better everyday. No C-pap but still on some "blow-by" and I'm hoping that as his bodily functions return to nomal so will his oxygen saturation levels. As always keep on praying because we are not out the woods yet!

Guess what Mom....the doc's say I'm good enough to move out of ICU to the floor today. I know you're concerned but they seem to think I'll do just fine so don't worry ....I'll call ya later when I get to my new pad OK.....Oh and Pops got a handle on this "moving thing" so no worries....well gotta go..........

...............I'm ready....lets see I got my ladybug and Oh wait!!!!...one more quick wiff of that "bubblegum flavored O2" and I'm on my way......

.....out of ICU with nurse Therese and Daddy driving. Everybody seemed to be so happy for me.....but.....

....especially Daddy.........Ok Pop you can slow down now!!! Once I got Daddy slowed down to a mild jog we finally arrived at the elevator and who to my surprise was waiting for me......

......my special friends the singing clowns and WOW did they have a funny song for me....I just love those clown lady's so much.......

...Ok Dad a little more of that "bubblegum flavored stuff please"....I guess I just got so excited seeing the clown lady's and moving.

.....Well here we are...the 2nd floor...I was suppose to be on the 1st but things changed so after a little bit of a wild goose chase we finally arrived at.....

.....room 2025...my new pad!!!! and look my kangaroo buddy jumped up to see our new digs! All my littlebug buddies like my new home and Daddy is hard at work making it like home.......

....so I think I'll just hug Mr. Wormy and take a snooze and dream of the day when I will be home with Mommy, Daddy and Abbey in "our home".... ......guess what....Daddy is dreaming of the same thing!

Tuesday, October 24, 2006

Just as Randy and Little Bug were wheeling his crib into his room on the first floor, the nurses promptly told them there had been a change of plans. Randy and Connor are now on the second floor in room 2025. A private room at that, which is much better, not only for sanity's sake, but for warding off the potential germs of a roommate as well. They are just settling into their new little home and I'm sure Daddy will have airplanes flying in no time at all.

It is Tuesday and Mama woke up at home today while Daddy stayed at the hospital last night with Little Bug. Daddy did all the usual hospital things....He woke up and showered in the community bathrooms (I hope they were clean honey and that you locked the door...) then he went to the computers to check the blog, then he headed down to kiss Connor before heading to the cafeteria for scrambled eggs. When my home phone rang about 9:00am I knew it would be Randy calling with a morning update. To my surprise he said, "Honey, they're moving him to the floor today!" "TO THE FLOOR", I exclaimed!!!!!!!!!!! What are they thinking, I thought!!!! One day they are pumping him so full of drugs that when it finally hit him on Sunday morning he literally slept for 13 hours straight!!!!! Now he is on a narcotic wean and all of his IV's are pulled and in their mind, he is not ICU material any longer.

Randy went down to the first floor where Connor will be transfered to to check it out and we will be in a double room on the window side. We've never been on the first floor before so we hope that we're not taking a step backwards and having to start all over with the doctors getting to know him and us. Our goal will be to push toward hospital discharge on Friday, but we'll see how this goes. This is Randy's first time to move out of ICU with Connor onto the floor. He assures me that he wants me to stay at home and rest up because he's gonna bring our baby home. We both are trusting and hoping that Little Bug will do well with this transition and not take any steps in the wrong direction. We will be continuing his narcotic wean at home and he will be on a new pain managment drug for a little over a month called Chlonadine. Our hope is that when everything is weaned off we will have a happy, healthy baby free of all these episodes, but we are also mildly sceptical.

My plan is to go back up to the hospital either, Wednesday or Thursday to help Randy out and give him a break. Thanks honey, for being willing to make the big transition with Connor and letting me get some rest. You are a fantastic Daddy and Connor is lucky to have you!!!!

I will post more this evening after I have received word from Randy on how things are going!!!! Thanks for all your continued prayers......don't stop......we're not out of the woods yet, but we can see the clearing ahead!!!! We're heading in a good direction, let's just pray we can stay on the straight and narrow path with Little Bug and no more bumps in the road!!!!

Monday, October 23, 2006

WOW WHAT A SEXY MAMA!!!!!! Boy I sure am a lucky boy for having such a fantastic Mom....and ya know what....I LOVE YOU MAMA WITH ALL MY HEART.......and I know Daddy does too cause he told me!!!!!!

HERE'S LITTLE BUG ON THE BI-PAP MACHINE....THIS IS IN PLACE OF THE VENTULATOR AND THE C-PAP!!

EVEN WHEN I'M OUT LIKE A LIGHT BECAUSE OF ALL MY SEDATION, MY HANDS STILL FIND SOMETHING INTERESTING TO HOLD ON TO!!!

MAMA SAYS I LOOKE LIKE A LITTLE RED BARRON PILOT IN MY NEW GET UP!! HA HA

MY LITTLE BUG FACE GOT ALL BRUISED UP FROM THIS AWFULL THING!!!! MAMA WAS MAD ABOUT THAT BUT MY BRUISES ARE STARTING TO GO AWAY BECAUSE I'M NOT WEARING THE BI-PAP ANY MORE!!!

SEE, I TOLD YOU I ALWAYS FIND SOMETHING INTERESTING TO HOLD ON TO.....THIS TIME IT'S THE LOVING HAND OF MY DADDY!!!!

HERE I AM WITH MY FAVORITE DADDY IN THE WHOLE WIDE WORLD!!!!

THERE'S SOMETHING REALLY STRANGE ABOUT MY MAMA AND DADDY....THEY KISS ME ALL THE TIME. I'M SURE GLAD THEY DO BECAUSE I LOVE KISSING!!!!!!

MAMA'S SO PROUD OF ME FOR STAYING OFF THE VENTULATOR......THERE WERE LOTS OF TENSE MOMENTS WHERE WE THOUGHT I WASN'T GOING TO BE ABLE TO STAY OFF THE VENT.....BUT I SHOWED THOSE DOCTORS.......I AM A BIG STRONG BOY WHO JUST NEEDS A CHANCE TO PROVE IT!!!!

THERE GOES DADDY AGAIN.......KISSING MY HEAD IN BETWEEN EACH SENTENCE OF A STORY HE WAS TELLING ME ABOUT THE HEDGEHOG BOY......I REALLY LIKED THAT STORY DAD, I CAN'T WAIT UNTIL YOU FINISH IT TOMORROW......

About Me

Hi my name is Connor Scott Robertson. I was born on January 11, 2006. My daddy is a pilot and I think that is so cool. My mommy gets to stay home with me which I think is super neat because we snuggle and cuddle alot. I was born with a special set of circumstances that require me to get some extra special attention from my doctors. I have Down Syndrome and a heart defect called an AV Canal. I have had a pretty eventful 1st year of life. I have been hospitalized most of the time and have spent alot of time in and out of doctors offices. Even though I have had a lot of difficulty so far, I am quite a fighter. My folks say I can do anything I put my heart and mind to and I believe them, because I am fighting really hard to become a big strong boy. Would you all take the time to say extra prayers for me? I know that God listens to our prayers and I believe he will answer our prayers to bring healing to my body. Can't wait to meet you all and have you watch me grow to be a mighty man of God one day.